Peoria Heights woman using her creative talents after her own transplant to help others

PEORIA HEIGHTS — Maureen Leuba loves to tell stories — after years of making up stories with her three sons, she recently began writing her first novel.

But the harrowing life and death story the Peoria Heights resident told legislators in Washington, D.C., on July 12 was not fiction, it was about her own fight with an aggressive blood cancer, the stem cell donor who saved her life, and the agency that brought the two together — Be The Match.

Leuba was one of about 30 survivors, donors and family members who made the trip to lobby for Be The Match, the largest and most diverse bone marrow registry in the world. Federal funding to the agency was cut by $3 million last year.

“Three million dollars could have added 20,000 more volunteers and 1,000 cord blood units to the national registry,” Leuba explained while sitting in the dining room of her home recently.

Diagnosed with acute myeloid leukemia two years ago, Leuba knows the importance of Be The Match. A stem cell transplant saved her life, and she couldn’t get it from relatives even though they were all willing.

That’s not unusual. The matching process looks at human leukocyte antigen (HLA), a protein found in most cells in the body. The immune system uses this protein to know which cells belong in the body and which do not — matching these markers is critical to a successful transplant. Being a close blood relative is not enough to ensure a close match — only about one in four patients match with siblings from the same mother and father, according to information on the Be The Match website.

“Seventy percent of transplant recipients turn to programs like Be The Match, and about 3,000 die a year waiting for a match,” Leuba said.

Unexpected nightmare

A very active mother of three boys, Leuba realized something was wrong when she couldn’t keep up while hiking with her family in Michigan two summers ago. She had been having symptoms for about two weeks — sweats, headaches, fatigue and significant bruising. But it was a pain in her abdomen that sent her to the emergency room.

“I thought I was having a gall bladder attack or possibly an abdominal aortic aneurysm,” said Leuba, a former nurse.

She’d been under a lot of stress — her mother had recently died, and the family was preparing to move to China for her husband Sean’s job with Caterpillar Inc. Leuba was stunned when physicians in the emergency room quickly diagnosed acute myeloid leukemia.

“We were all shocked,” she said. “The packers were coming to move us to China in a couple weeks.”

Page 2 of 3 - The trip was immediately canceled, and Leuba started chemo the next day.

“AML is very aggressive,” she said. “We had to react quickly.”

A stem cell transplant was Leuba’s only hope, but first the disease had to be forced into remission. Just like the cancer, the treatment also is aggressive. Leuba’s immune system was essentially destroyed in the process, so she had to be closely monitored. She spent 30 days at OSF Saint Francis Medical Center during her first intense round of treatment. Three-week breaks were followed by two more weeklong chemo sessions before Leuba was ready for a stem cell transplant.

Be The Match helped doctors find a donor with HLA markers that closely matched Leuba’s. According to information on the Be The Match website, “HLA matching promotes the growth and development of new healthy blood cells (called engraftment) and reduces the risk of a post-transplant complication called graft-versus-host disease.”

Having a large pool of donors to choose from is important — finding a perfect match is not easy, and some people of mixed ethnic backgrounds can have a particularly difficult time finding a match. Fortunately for Leuba, Be The Match found good candidates for her right away.

“There are 19 million donors in the bank, and they found two matches for me that were perfect,” Leuba said.

Receiving the actual stem cell transplant was a quick process — about 20 minutes, she said. But the aftercare took quite a bit longer. Leuba had the transplant in St. Louis, where she spent 40 days in the hospital. Then she stayed about two and a half months in a nearby apartment because she had to remain close to the hospital. During that time a rotating group of friends and family members stayed with her as she slowly regained her strength.

“I would reach these little milestones. I remember the moment when I was able to walk stairs again, or when I was able to do the elliptical in the apartment complex,” Leuba said. “The people staying with me would take me to the mall — it was winter and so cold outside — and we would walk around.”

Leuba came home in February. By summer she was well enough to take a long vacation to Arizona and New Mexico with her family.

About a year after the transplant, Leuba tried to find out who her donor was, but the woman wished to remain anonymous.

“I want to give her a hug,” Leuba said. “I did send her a letter, and I know that she got it — it was a huge, gushing thank you.”

Giving back

Two years after diagnosis Leuba is doing well, though she is dealing with a mild case of graft-versus-host disease.

Page 3 of 3 - “I get cramps and severe joint pain when it flares up,” she explained. “I’m on a very low dose of immunosuppressants.”

During her recuperation Leuba has gotten more serious about her lifelong interest in creative writing. She’s in the process of writing a young adult novel and has penned multiple poems about her medical odyssey, which she plans to combine into a short anthology.

With a strong desire to give back, Leuba also has been working as an advocate for Be the Match. In addition to her trip to Washington, she has organized a bone marrow donor drive from 11 a.m. to 2 p.m. Sept. 7 at her church, United Presbyterian Church, 2400 W. Northmoor Road, Peoria.

“Come and sign up and submit a swab kit,” Leuba said. “It only takes about 15 minutes. They swab the inside of your cheek.”

For donors 18 to 44 years of age, the process is free. (Learn more about the process at www.bethematch.org.) The results of the swab test will go into the Be The Match registry.

“You might get a call three months from now, you might get a call 10 years from now, or you might never get a call,” Leuba said.

Regardless of when they get called, volunteers on the registry have the opportunity to become a hero.

“There are so many waiting for a match, as well as many whose lives could have been saved,” Leuba said. “A match for any of them could be out there and not be on the registry. ... (Volunteers) have the power to possibly save someone’s life.”

Leslie Renken can be reached at 686-3250 or lrenken@pjstar.com. Follow her on Twitter, @LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.